Friendship

I have had the wonderful pleasure of getting to know some other moms who have children with Sanfilippo.  We can only talk online, but it has proven to be such a beneficial support system for me.  I feel understood.  Even though each child's progression in the disease is different, we all know that terrible pain of the diagnosis, the feelings of grief, and the unbearable sadness of watching your child be afflicted by such an awful disease.

Tonight we started getting out the Christmas decorations.  We have the tree up, with the lights on.  That is as far as I could get.  The holidays are going to be tough this year.  I can already feel the emotions welling up inside of me.
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Misty said…
Hi Shannon, The holidays are etra difficult. We can't help but think about the future. Just TRY to remember that you have today and make the most of it. Put the music on dance and decorate there will be time for sorrow later. Please e-mail me or call if you EVER need to talk. You know that I am right there with you and I truly do understand. Misty, mom to Will. www.miracle4will.com
December 3, 2008 at 8:04 AM
SioMcLucky said…
I am so happy you have that support circle!! Hope Disney is wonderful, the holidays as joyous as possible and I am sending many hugs to all of you.
December 3, 2008 at 11:40 AM
Valerie Nelson said…
Shannon, Our thoughts are with you guys. Yes, the holidays are difficult. Even though the boys are here, and I know I should be excited, it is that much more evident that Caitlyn is missing. There is no "secret" to easing the pain, but I've found that it takes a dedicated effort to see the positives...It's so hard to do, sometimes, and it doesn't always work, of course. But, those friends you've found through this journey and everyone else who knows your family are here for you during those tough days. I know just what you mean about being understood - I've made many friends as a result of Caitlyn's death, and there is a sense of comfort . Rely on us, let us offer a shoulder or an ear...And know that we're holding your hearts. Lots of love, -Valerie
December 3, 2008 at 11:54 AM
Anonymous said…
Shannon, Hi there! I'm filling out my CFC pledge card and I'd like to give to any organization working on Sanfilippo, but I can't seem to find it in the CFC catalogue - can you give me the names of some organizations? Tks, Alison
December 4, 2008 at 4:58 AM
Shannon said…
As of now, the MPS Society isn't listed. (Matt checked.) We will look into getting them added. In lieu of that, you could donate to Make-A-Wish. They are incredible and will be granting both kids wishes soon. Thanks for asking!
December 4, 2008 at 7:20 AM
Angi said…
I am also glad to hear you are finding a circle of friends who can be there/understand you in ways that no others can. You & Matt need that.

Know that you are NEVER alone though - you are covered in prayer and positive thoughts every single day...
December 4, 2008 at 11:04 AM
Laura said…
Thank God for a place where you can be understood. That is such a huge answer to prayer.

We love and support you guys, but we can't really know what it's like. We can only imagine. And I can imagine that it means the world to talk with people who really, truly know San Filippo like you do now.
December 12, 2008 at 12:23 PM
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